The Pink Perspective on my life with Cystic Fibrosis

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Remember my last post, when I was so full of hope and excitement that if I can get myself as fit as I can, my life could change.

In my head, I had visions of hiking, doing normal household stuff and running errands, going out socially for more than 40 minutes, and even feeling well enough to go on a vacation (it has been 11years…we have planned so many trips that we had to cancel because I had to go into the hospital or was close to it).

Then I got sick. Too sick to start working out. MRSA sick with constant fevers, cough, sinus issues, and fatigue. Oh and the Flu. I took the Tamiflu and also started antibiotics. By the end of week 2 on antibiotics, I told the doctor I wasn’t feeling quite better and that probably I needed another week.

I finished week 3, and felt marginally better. Stronger. And as fate worked out, the weather was warming up enough to use my treadmill in the basement (it is not heated).

Three days after finishing the antibiotics, I started coughing, but figured that it was just left over stuff from the recent infection.

After another three days, I suddenly began coughing uncontrollably, felt my fever coming on, was feeling very junky in my lungs, and I knew that my MRSA was ramping up again.

I spoke to my doctors on Monday, who put me on a different antibiotic, and tonight – 24 hours later, laying on the couch unable to sleep, coughing which sounds like a pipe has burst, and having to wear my oxygen (which is a huge bummer because it had been weeks since I needed it more than a few hours at a time).

In the meantime, several members of my family have had their own issues to deal with, and I find myself having difficulty keeping my head above water.

I am tired of being sick. I’m tired of coughing. I’m tired of fevers ravaging my body with aches. I’m tired of having to judge whether doing a little laundry is going to force me to nap for three hours later That day or have to rest the entire day tomorrow.

I’m sorry that this is not a positive sounding post, but it’s almost midnight, I feel too awful to sleep, and my mind is racing with all the things that I am probably never going to get to do. Thanks I’ve been trying to do for years, thinks that any 46-year-old should be able to do. I’m sorry that this is not a positive sounding post, but it’s almost midnight, I feel too awful to sleep, and my mind is racing with all the things that I am probably never going to get to do. Things that I’ve been trying to do for years, things that any 46-year-old woman should be able to do.

The cliché about having your health being everything, is so damn accurate that it hurts. And what makes it worse is that I am watching the world go by. Outside, kids are playing and people are walking their dogs. The movies and TV shows I watch because I’ve read everything that I have and honestly cannot concentrate on anything else at this point – keep telling me where to go for vacation, parties I should be attending every weekend, planning for summer, etc., On Facebook, and in articles, I get to read about life as a parent, exotic places to travel to, and the cool/ fun/ amazing adventure others are experiencing.

I feel like there really isn’t much more to look forward to, when every time I try to plan something, whether it’s to go to the store myself, to work out, or to do something big like visiting my in-laws, my health blocks me from having a life.

Like this:

It’s been two years since I ended my three-month stint on the then-new CF drug targeted at my particular mutation(s). If you recall, I had a lot of side effects and medication interactions that forced me to call a cease fire.

I lost a lot of lung function during that time, and have not yet been able to get back to where I was, prior to the medication.

Now, it could have been coincidence. I could still have had the series of CF lung exacerbations and hospitalizations had I not taken the medication. I might still have ended up needing Oxygen at home after one particular infection flare-up, and still need it when I am sick. I might still have lost a lot of strength during those hospitalizations. And certainly, it had nothing to do with having Sepsis a year ago.

I have decided, however, that I am not giving in. Strength and energy have lost in this war. Now it’s time to go to battle to regain what I have lost. It’s time to reclaim myself.

I was never an athelete, but I had strong lower body muscles from dancing in high school, going through ACL reconstrtion rehabilitation, and doing Pilates for the past 20 years. I very suddenly lost my calves of steel during a September 2016 hospitalization, and my overall muscle tone disappeared.

So I have decided the one thing I can do that can help support my body and improve my energy and strength is a solid commitment to fitness. I used to be a gym rat, but too-frequent infections, symptoms – pain and nausea – from chronic pancreatitis, and side effects from several medications, have collectively rendered my gym membership useless.

So I’m starting from scratch.

It all starts with walking. I need to build up my cardiovascular system to get help my lungs and strengthen my legs. I will then return to light-to-moderate weight training to increase my overall muscle mass and give me that strength boost hat I currently lack. And then move onto hiking outside. Maybe on the flats, but getting my groove on – outside in the Vitamin D and fresh air – will be amazing.

Yeah, I’m sure I’ve written about this stuff before, but I feel that so many of my systems can benefit from this new commitment. I have to do this. So I got out my whiteboard and started writing down all the possible benefits.

Better moods. Helping my depression and anxiety.

Strength to carry me when my lungs are working harder when sick.

Conditioning. Keeping my heart pumping efficiently.

Lung clearance. Nothing like a good cough to get that junk out!

Digestive support. Keeping things moving.

Energy to live. Housework, socializing, driving. Holidays.

Confidence. I’m tired of being weak and on the sidelines, feeling unworthy to contribute.

I am going public with my plan for accountability.

I may not move mountains, but at least I will be able to climb a few hills. And to me, right now, that can make all the difference in the world.

Interestingly, it has been eight months since my last admission. I have been taking oral antibiotics to treat my MRSA infections, but after three months and several courses of these antibiotics, my lung function continues to drop and I continue to be actively sick. Aside from the MRSA, I have a handful of other bacterial strains that often Colonize CF lungs.

What stinks is that every time I go on antibiotics, I would start to feel a bit better, but within a week of finishing my 2 to 3 week course, I get sick again. I have to say it’s really hard to know when to wave the white flag and admit to my doctors that yes, I do need their intervention.

I will get a PICC line IV (long term, semi permanent) inserted into my arm or chest, which allows medication to go into my bigger veins were they won’t irritate the smaller veins closer to the surface.

The PICC line is usually a double lumen kind, which means that there are two tubes entering my vein so that I can have two medications or fluids running at the same time.

I will likely be taking a cocktail of three IV antibiotics, each with their own schedule.

Considering one of my medications runs for 12 hours a day, there are two other medications that have to run on their own schedules, and I usually receive IV fluids 24 hours a day to protect my kidneys, both IV lines are close to constantly being used.

Hence is the typical process of the 2 to 3 week hospitalization for a CF lung exacerbation.

It’s uncomfortable on so many levels, it can be painful, I get a lot of undesirable side effects, and I become sleepless and invariably stressed out. I feel bad for my nurses and my physician team because I get very emotional when I’m inpatient.

Depression and anxiety make things worse, as it does for many CF patients. Imagine being stuck in a 10 x 10 room, being allowed to leave the room only when scheduled for a test, having to eat, sleep, and do everything else from a lumpy bed in a tiny room with a window that often faces a bleak city scape. Oh, and going no longer than 10-20 minutes without someone walking into my room.

Despite all of the things I can and often do go wrong, however, I know that I am going inpatient to get better and to slow down the progression of the past few months. I am to the point where even getting up to shower by myself is a huge challenge, let alone being able to do do anything like cooking or cleaning or the basic stuff that people do when they live their lives.

So for the next few weeks, I will be doing everything in my power to stay calm and sane. I still have this option in my arsenal, so I am thankful. Not ready to think ahead to a point when no more antibiotics work for my bugs. Until then, I continue to fight.

Like this:

So it’s been quite a while and I really hate saying that on a blog because it’s obvious when the last time I posted was…

Since my hospitalization, I have been trying to build back my strength and energy after three weeks fighting sevral strains of pneumonia, MRSA, and sepsis. Not only did I lose a lot of weight but I also lost muscle, so I was exceptionally weak.

I have also been battling some major stomach and a sinus disease, so it really hasn’t been a fun time, so to speak.

That’s one of the hardest parts about having CF, is the fact that it can affect so many different parts of your body, especially as you age. Decades of taking life-saving medications can cause problems that were never considered because there was very little chance of patients living into adulthood long enough to have these problems.

I did get to have a fun day visiting with my family when I attended a graduation party for my niece and my nephew. I also got to spend Easter and Mother’s Day with my family, where as in recent years I had not been able to do so.

MY sisters and I on Easter

I’m hoping to be able to do a few other things this summer and at least make a few more memories to hold onto. We all know what is likely around the corner for me so all I can do is stay positive and live in each moment. Because that is all we’re guaranteed is this very moment. Hope to be back soon. Have a great rest of your season!

Like this:

Over the past two months, I have been recovering from a 3-week stay in the hospital for lung infections due to some pretty serious bugs which are tough to treat. I also ended up with a blood infection, and my kidneys suffered some damage from the strong antibiotics I had to take via IV.

When I first came home – for the first time on home oxygen – I was not prepared for how difficult the recovery journey would take.

The ride home from hospital

I had lost significant muscle tone and overall physical strength. I had sapped most of my reserves of hope that I would ever be “well enough” again. I was also on 2L oxygen 24/7.
It was through sheer stubborness, plenty of crying sessions, dozens of prayers for healing and courage, that mentally, I could get through this experience.

Physically – well – we are not quite there yet. The good news is that I only need Oxygen for extreme exertion (such as going grocery shopping, driving, etc.), I don’t need my husband’s help to shower, and I can now cook a few days a week.

I just began driving about 2 weeks ago – my upper body strength wasn’t much to begin with, but one morning, I decided that I was going to run errands by myself. Good thing I brought along the portable O2 concentrator because I ended up having to sit on the floor at the store to rest. But I made it to the pharmacy as well, and carried in and put away all my purchases. It took 2 days to recover, but it began getting the ball rolling.

I actually felt well enough to celebrate Easter and Mother’s day – holidays that fall into one of the times of year that I am sickest.

Mother’s Day with one of my Godsons

The best medicine – one of my cats!

Ken and I at Easter…a rare sunshiny day! My rock!

Unfortunately, I have had to miss some other important family events due to my chronic issues and how strong/not strong enough I felt on those days, which were very difficult. And my CF is trying to take me down again with some very unpleasant belly problems. But my doctor is on top of it and trying to keep me out of the hospital

As spring turns into summer, I hope to enjoy life more, and maybe even have some energy left to enjoy friends!!!! Wouldn’t that be wonderful???

I have to say, if it weren’t for Facebook, I would not have the support and encouragement that I have. Even though I don’t much get to see friends, those who really care have made themselves known. Prayers, memes to make me laugh, cards, care packages, letters – the love behind it all empowers me to keep pushing, to keep fighting.
There are so many people I want to thank, and cannot possibly type that long right now, but you know who you are.

Like this:

I was discharged from the hospital 10 days ago, after nearly 3 weeks of intense antibiotic and airway therapy for a lung exacerbation due to Cystic Fibrosis.

It was the sickest I have ever been in my entire life – and I have had some doozies over the past several decades.

And it isn’t over yet.

Since coming home, I had to get used to being on oxygen full-time. I am hoping and praying that I will not need it indefinitely, and that it is just a matter of recovery. But in the meantime, I depend on a machine to create the O2 and recieve it via a nasal cannula.

At home, I am attached to this…

But we bit the bullet and decided to get a portable Oxygen concentrator to allow me to leave the house without those heavy canisters. It runs on electricity and batteries, and when fully charged, lasts 8-9 hours (based on the amount of oxygen I need right now).

With batteries, it is about 7 pounds. It seems a whole lot better than worrying about filling canisters and having enough around.

I do have a giant canister that lasts about 6 hours, in case of power outage, sitting in the corner just in case.

I have some more tests to get done this week and will see my CF doctors next week to see how my lungs and kidneys are doing. As soon as my creatine levels are back in a healthy range, I am going back on inhaled Coliston (the last resort antibiotic) for a month or so, to try to keep one particular bug from blowing up again.

My priorities now are getting stronger, trying to regain some of the 8 pounds I lost, keeping my lungs as clear as possible, resting, and tryig to do some “normal” things. Folding laundry, fixing a meal, walking to and from the kitchen to keep my water bottle filled…seriously, I have to super hydrate, so I fill it up every hour or so.

Then there is the very important task of reorienting my kitties to a mommy-ruled domicile. Daddy has a tendency to spoil them when I am not around! I admit that it has been hard not to spoil them since I came home – I missed them so much!!

I am also dealing with a lot of conflicting feelings – gratitude over my recovery, fear about how sick I was, dread that this isn’t the worst I will face, but joy that right now, I feel safe and relatively comfortable.

I just have to remind myself from where I’ve traveled. And that my husband and family are here to help me along this journey.